U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2250 Mail: Stop SSOP, Washington, DC 20402–0001

22–196 PDF 2006

S. Hrg. 109–225

JUVENILE DIABETES: EXAMINING THE PERSONAL

TOLL ON FAMILIES, FINANCIAL COSTS TO

THE FEDERAL HEALTH CARE SYSTEM, AND

RESEARCH PROGRESS TOWARD A CURE

HEARING

BEFORE THE

COMMITTEE ON 

HOMELAND SECURITY AND 

GOVERNMENTAL AFFAIRS 

UNITED STATES SENATE

ONE HUNDRED NINTH CONGRESS

FIRST SESSION

JUNE 21, 2005

Printed for the use of the 

Committee on Homeland Security and Governmental Affairs

(

(II)

COMMITTEE ON HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS 

SUSAN M. COLLINS, Maine, Chairman 

TED STEVENS, Alaska 

GEORGE V. VOINOVICH, Ohio 

NORM COLEMAN, Minnesota 

TOM COBURN, Oklahoma 

LINCOLN D. CHAFEE, Rhode Island 

ROBERT F. BENNETT, Utah 

PETE V. DOMENICI, New Mexico 

JOHN W. WARNER, Virginia 

JOSEPH I. LIEBERMAN, Connecticut 

CARL LEVIN, Michigan 

DANIEL K. AKAKA, Hawaii 

THOMAS R. CARPER, Delaware 

MARK DAYTON, Minnesota 

FRANK LAUTENBERG, New Jersey 

MARK PRYOR, Arkansas

MICHAEL D. BOPP, Staff Director and Chief Counsel 

PRISCILLA H. HANLEY, Professional Staff Member 

JOYCE A. RECHTSCHAFFEN, Minority Staff Director and Counsel 

ADAM R. SEDGEWICK, Minority Professional Staff Member 

TRINA D. TYRER, Chief Clerk 

(III)

C O N T E N T S 

Opening statements: Page 

Senator Collins ................................................................................................. 1

Senator Lieberman ........................................................................................... 3

Senator Akaka .................................................................................................. 4

Senator Lautenberg .......................................................................................... 6

Senator Chafee ................................................................................................. 8

WITNESSES 

TUESDAY, JUNE 21, 2005

Mary Tyler Moore, International Chairman, Juvenile Diabetes Research 

Foundation ............................................................................................................ 8

Douglas Wick, Film Producer and Co-Head, Red Wagon Entertainment ........... 12

Gary Hall, Jr., Olympic Gold Medal Swimmer ..................................................... 13

Allen M. Spiegal, M.D., Director, National Institute of Diabetes and Digestive 

and Kidney Diseases, National Institutes of Health, U.S. Department of 

Health and Human Services ............................................................................... 16

Stephanie Rothweiler, Delegate (Age 11), JDRF Children’s Congress, Falmouth, Maine ....................................................................................................... 22

Ethan Falla, Delegate (Age 13), JDRF Children’s Congress, New Britain, 

Connecticut ........................................................................................................... 23

Aaron Jones, Delegate (Age 10), JDRF Children’s Congress, Piscataway, New 

Jersey .................................................................................................................... 24

Shaynah Jones, Delegate (Age 13), JDRF Children’s Congress, Piscataway, 

New Jersey ........................................................................................................... 24

Katie Clark, Mother on behalf of Ellie Clark, Delegate (Age 4), JDRF Children’s Congress, Grandville, Michigan ............................................................... 25

Lauren Stanford, Delegate (Age 13), JDRF Children’s Congress, Plymouth, 

Massachsetts ........................................................................................................ 26

ALPHABETICAL LIST OF WITNESSES

Clark, Katie: 

Testimony .......................................................................................................... 25

Prepared statement .......................................................................................... 64

Falla, Ethan: 

Testimony .......................................................................................................... 23

Prepared statement .......................................................................................... 60

Hall, Gary, Jr.: 

Testimony .......................................................................................................... 13

Prepared statement .......................................................................................... 38

Jones, Aaron: 

Testimony .......................................................................................................... 24

Prepared statement .......................................................................................... 62

Jones, Shaynah: 

Testimony .......................................................................................................... 24

Prepared statement .......................................................................................... 63

Moore, Mary Tyler: 

Testimony .......................................................................................................... 8

Prepared statement .......................................................................................... 31

Rothweiler, Stephanie: 

Testimony .......................................................................................................... 22

Prepared statement .......................................................................................... 58

Page

IV

Spiegel, Allen M., M.D.: 

Testimony .......................................................................................................... 16

Prepared statement .......................................................................................... 41

Stanford, Lauren: 

Testimony .......................................................................................................... 26

Prepared statement .......................................................................................... 66

Wick, Douglas: 

Testimony .......................................................................................................... 12

Prepared statement .......................................................................................... 34

APPENDIX

James Schlicht, Chief Government Affairs and Advocacy Officer, American 

Diabetes Association, prepared statement ......................................................... 68

(1)

JUVENILE DIABETES: EXAMINING THE PERSONAL TOLL ON FAMILIES, FINANCIAL 

COSTS TO THE FEDERAL HEALTH CARE 

SYSTEM, AND RESEARCH PROGRESS TOWARD A CURE 

TUESDAY, JUNE 21, 2005

U.S. SENATE, COMMITTEE ON HOMELAND SECURITY

AND GOVERNMENTAL AFFAIRS, Washington, DC. 

The Committee met, pursuant to notice, at 9:16 a.m., in room 

216, Hart Senate Office Building, Hon. Susan M. Collins, Chairman of the Committee, presiding. 

Present: Senators Collins, Lieberman, Akaka, Lautenberg, and 

Chafee. 

OPENING STATEMENT OF CHAIRMAN COLLINS 

Chairman COLLINS. Good morning, everyone, and a special good 

morning to all of the children who have joined us from all over the 

country who are here today. The hearing will now come to order. 

As one of the Co-Chairs of the Juvenile Diabetes Research Foundation’s 2005 Children’s Congress, I am pleased and proud to hold 

this hearing to examine the devastating impact that juvenile diabetes has had on American children and their families. In addition 

to hearing this morning about the personal experiences of these 

young people, we also look forward to hearing about the research 

developments and breakthroughs in juvenile diabetes research that 

hold such a hope for better treatments and ultimately a cure. 

This is the third Children’s Congress hearing that I have had the 

honor to Chair. It has been a great privilege to work with Mary 

Tyler Moore, who has been the International Chairman of the Juvenile Diabetes Research Foundation (JDRF). The commitment of 

the JDRF to finding a cure is so inspiring. 

I also want to welcome all of our distinguished witnesses, especially the 150 delegates to the Children’s Congress who have traveled to Washington from every State in the country to tell Congress 

what it is like to have diabetes, just how serious it is, and how important it is for Congress to fund the research necessary to find a 

cure. 

And I am particularly pleased to welcome the delegate from the 

great State of Maine. She is 11-year-old Stephanie Rothweiler of 

Falmouth. I met with her yesterday, and she is just terrific. You 

are all going to enjoy her testimony. 

2

As the founder and the Co-Chair of the Senate Diabetes Caucus, 

I have learned a great deal during the past few years about this 

disease and the difficulties and heartbreak that it causes for so 

many American families as they await a cure. Diabetes is a lifelong condition that affects people of every age, race, and nationality. It is the leading cause of kidney failure, blindness in adults, 

and amputations not related to injury. Moreover, it is estimated 

that diabetes accounts for more than $132 billion of our Nation’s 

annual health care costs. Health spending for people with diabetes 

is almost double what it would be if they did not suffer from the 

disease. 

These statistics are truly overwhelming, but what really motivated me to devote so much energy to this cause was meeting more 

and more people like our delegates today and their families, whose 

lives have been forever changed by diabetes. In fact, it was a meeting that the JDRF set up for me in my very first year in the Senate 

that motivated me to found the Senate Diabetes Caucus. 

I will never forget meeting in my Portland, Maine, office with a 

family who had a 10-year-old girl who had diabetes. She looked up 

at me and said that she wished she could just take one day off from 

having diabetes—her birthday or Christmas, just one day. And, of 

course, she can’t. That made me feel that I had a special obligation 

to be her champion in Congress and to work for the research that 

one day will allow her to take days off from having diabetes. 

The young people who are here today are so important. I want 

to tell all of you that, when you tell your stories to Members of 

Congress, we listen because you put the human face on this disease. You put the human face on all of those statistics. And you 

will help us focus on what Congress can do to better understand 

and to fund the research that will ultimately conquer juvenile diabetes. 

In individuals with juvenile diabetes, the body’s immune system 

attacks the pancreas and destroys the islet cells that produce insulin. An average child with Type 1 diabetes will have to take more 

than 50,000 insulin shots in a lifetime. Juvenile diabetes is the second most common chronic disease affecting children, and it is one 

that they never outgrow. 

While discovery of insulin was a landmark breakthrough in the 

treatment of people with diabetes, it is not a cure. But there is 

good news on the horizon. Since I founded the Senate Diabetes 

Caucus in 1997, funding for diabetes research at the National Institutes of Health has more than tripled so that we are now spending more than $1 billion a year on this important research. And as 

a consequence, as a direct result of that investment, we have seen 

some encouraging breakthroughs, and we are on the threshold of 

a number of important new discoveries. 

But now is not the time to take our foot off the accelerator. We 

must maintain our commitment to increasing funding for diabetes 

research so that we can take full advantage of these opportunities. 

I am particularly excited about the promise that embryonic stem 

cell research holds for a cure for juvenile diabetes. Early research 

has shown that stem cells have the potential to develop into insulin-producing cells to replace those that have been destroyed in 

people with Type 1 diabetes. We simply cannot ignore the potential 

3

that this research holds for the young people who are here with us 

today. 

A major focus of the 2003 Children’s Congress was the Pancreatic Islet Cell Transplantation Act, which I introduced to advance this important research. Thanks to the lobbying efforts of the 

JDRF children and their families, 52 Senators cosponsored that 

bill. And as further testimony to your powers of persuasion, it was 

passed unanimously by both the House and the Senate and signed 

into law by the President late last year. So just see what we can 

do when we all work together. 

You are the very best advocates, and I am so pleased to have all 

of the children joining us today. 

Senator Lieberman. 

OPENING STATEMENT OF SENATOR LIEBERMAN 

Senator LIEBERMAN. Thank you very much, Madam Chairman. 

Thanks for your leadership, which has really been life-enhancing 

and life-saving in this area. 

Good morning, kids. How are you? It is not exactly summer camp 

here, is it? [Laughter.] 

It is great to have you here. I thought when I walked in, if you 

would allow me to paraphrase Paul Revere, the red shirts are here 

and the gray shirts are here. [Laughter.] 

But it is not the British that are coming, but this disease that 

has come and attacked us. You are here to make sure that we attack back and stop its movement forward. Plus, you are the best 

looking group of lobbyists that I have seen around Washington in 

a long time. [Laughter.] 

Just by being here and telling your story, you are going to have 

an effect. I particularly thank all the witnesses for being here. I am 

proud that on the second panel, one of the witnesses is Ethan Falla 

of New Britain, Connecticut, 13. He is a member of his school 

Honor Society and is very active in sports. Senator Collins and I 

occasionally trade ethnic references, so I would like her to know 

that Ethan is an accomplished Irish dancer. 

Chairman COLLINS. Great. 

Senator LIEBERMAN. He thinks it would be cool, however, to be 

a mounted police officer, and I am sure he will do that and much 

more. 

I just want to say a few words to add on to what Senator Collins 

said. The fact is that we live at an extraordinary time in human 

history. As a doctor said to me a while ago, we have learned more 

about the human body in the last 25 years than in all of history 

before that. It is amazing. And that knowledge that we have is already allowing us to treat—and if we work together will allow us 

to cure—diseases like diabetes and juvenile diabetes, that affect 

millions of people here in America and around the world. It began 

with DNA and the Human Genome Project and, of course, the extraordinary work that Senator Collins referred to that would hopefully go forward with embryonic stem cell research. 

This is a disease that affects many people, but I want all of you 

to be optimistic that you are lucky enough to be alive at a time 

when we are going to be able to treat, and I want to stress again, 

cure these diseases if we just work together and put enough money 

4

into the research to make it happen more quickly. It is within our 

reach. 

I have been working on a proposal, which as soon as I get ready 

I am going to share with Senator Collins, because she and I have 

had a pretty good track record in getting things done around 

here—along with my colleagues on the Committee, Senator Akaka, 

Senator Lautenberg—a proposal that I am tentatively calling the 

National Center for Cures, which would be either alongside of or 

an independent part of the NIH. And the focus here is to make 

sure that we are not only investing, more money in basic research, 

as we are thanks to Senator Collins and others, but that we are 

also investing in a term I have learned—‘‘transformational research.’’

Now, what does that mean? It is the research that is done to 

take the basic research that brilliant people are working on and to 

bring it to the medicine chest, to the bedside, to everybody’s home. 

So it is not just fascinating research, but it is actually treatments 

and cures. That is the kind of coordinated effort I think we need, 

and it takes money to do it. 

I close with a quote from Jonas Salk, developer of the polio vaccine. When I was a kid growing up, and that was so long ago that 

dinosaurs roamed the earth. [Laughter.] 

Or at least it feels like that. But anyway, Salk was the developer 

of the polio vaccine, which affected so many people of my generation. Kids and parents lived in fear of the disease. Salk developed 

the vaccine and he said, ‘‘Our greatest responsibility is to be good 

ancestors.’’ We don’t think of ourselves that way. Those are words 

to live by, words to work by, and words to guide us as we move 

toward our goal of better treatments and, yes, cures for diabetes. 

We must be good ancestors, those of us up here, and those of you 

who will follow us. In the words of the Juvenile Diabetes Research 

Foundation International, ‘‘Let us be dedicated to finding a cure.’’

Thank you, Madam Chairman. 

Chairman COLLINS. Thank you. 

[Applause.] 

Chairman COLLINS. Senator Akaka. 

OPENING STATEMENT OF SENATOR AKAKA 

Senator AKAKA. Thank you very much, Madam Chairman. Thank 

you for conducting today’s hearing on juvenile diabetes. 

I want to begin by using a word that is so well known in Hawaii, 

across the country, and around the world. I would like to hear a 

response from all of you young people and the audience, as well, 

and I want to begin by saying aloha. 

Audience Response. Aloha. 

Senator AKAKA. Thank you so much. In Hawaiian, ‘‘aloha’’ means 

love. And when I said aloha, I was telling you I love you. And when 

you said aloha, I know you didn’t know—— [Laughter.] 

But you are telling me that you love me, too. In this room, we 

are trying to see what we can do together. 

So I am going to take the time to tell you how Hawaii has been 

affected by diabetes, as well as what we are doing here in Congress 

to help you. 

5

Diabetes is a significant health problem in my home State of Hawaii. Do you know that an estimated 100,000 people in Hawaii 

have diabetes, according to the State Department of Health? And, 

the Hawaii Medical Service Association notes that approximately 

2,300 people on the Island of Oahu alone have Type 1 diabetes. 

More than 900 people in Hawaii die every year of diabetes-related 

causes in Hawaii. 

Diabetes is a disease that disproportionately affects Native Hawaiians and other Pacific Islanders. In fact, Native Hawaiians, 

Japanese, and Filipino adults living in Hawaii, are twice as likely 

to be diagnosed with diabetes as compared to other residents. 

Diabetes is a disease that is extremely difficult for patients to 

manage, as you know very well. Taking insulin injections and carefully monitoring blood sugar levels are not easy tasks for children 

and adults alike. Even with careful management, diabetes can contribute to significant health problems, such as heart disease, 

stroke, eye disease and blindness, kidney disease, and pregnancy 

complications. We must do more to increase funding for diabetes 

research and enact meaningful stem cell legislation to advance 

treatments and to make it easier to manage, treat, and prevent diabetes. 

Though today’s hearings focuses on juvenile diabetes, we are 

demonstrating our support for research to improve the treatment 

options available to all individuals suffering from both types of diabetes. Overall, we must continue to increase the funding for the 

National Institutes of Health. 

I have been frustrated by the substantial slowing of the growth 

of the NIH budget over the past few years. I understand the tremendous importance of medical research to help alleviate suffering 

and improve the quality of life, and I will continue to support efforts to increase research funding substantially for NIH, especially 

for diabetes-related research. 

Madam Chairman, like you, I am a cosponsor of S. 471, introduced by Senators Specter and Harkin, which would authorize Federal funding for research on stem cells derived from embryos donated from——

[Applause.] 

Senator AKAKA [continuing]. Embryos donated from in vitro fertilization. I remain opposed to the President’s stem cell policy, 

which prevents researchers from working on an area of research 

that is very promising and that could alleviate the pain and suffering of individuals. 

I look forward to hearing the testimony of our witnesses today 

who will share their experiences of living with diabetes. I am especially pleased that one of my constituents, 13-year-old Dana Akiu, 

is visiting Capitol Hill today. She is sitting right in front of me 

here. Dana, despite having diabetes, plays soccer for Kamehameha 

Schools and the Real Hawaii Futbol Club. I welcome Dana, all of 

our young people, and the Juvenile Diabetes Research Foundation 

advocates who are in Washington today. 

Again, Madam Chairman, thank you so much for conducting this 

important hearing, and I look forward to continuing to work with 

you and all of our colleagues to improve the lives of individuals 

who have diabetes. Thank you very much. 

6

Chairman COLLINS. Thank you. 

[Applause.] 

Chairman COLLINS. I am going to ask, if you can, to refrain from 

clapping until we hear from the children’s witnesses because we 

have a very short time this morning. The vote has been scheduled 

for 11 o’clock, so if I could ask that of you. 

Senator Lautenberg. 

OPENING STATEMENT OF SENATOR LAUTENBERG 

Senator LAUTENBERG. Thank you, Madam Chairman. I don’t take 

it as a direct response to the fact that I am about to speak, that 

the Chairman said don’t clap. I might not have gotten any applause anyway. [Laughter.] 

But I am so glad to see all of you here. I want to pay a compliment to Senator Collins because her early involvement in this 

fight against juvenile diabetes is well known. She sort of got the 

ball rolling here. All of us feel deeply about wanting to do something here, but Senator Collins really activated the activity of the 

response that you are seeing today. 

And I want to thank Mary Tyler Moore and the rest of you on 

the witness stand for bringing this subject so much to the forefront. 

That is the only way we are going to get enough attention to this 

to move this process along. 

Now, Senator Lieberman talked about things that might have 

happened when dinosaurs roamed the earth. Do you know what dinosaurs are? [Laughter.] 

I grew up so long ago. 

I want to congratulate Chairman Collins for the passage of pancreatic islet cell transplantation, which I was proud to cosponsor. 

The bill will make it easier for diabetes patients to receive this 

treatment, which has been described as the greatest advance in 

treating the disease since the discovery of insulin—a major step 

forward. 

And I especially want to recognize those young people who come 

from New Jersey. Jimmy Babcock from Ringwood, Gabrielle Barton 

from West Windsor, Katrina Cruise from Clifton, Aaron and 

Shaynah Jones from Piscataway, and Sammy Rovins from Vorhee 

Estate are all here, and I am pleased to be in the same room with 

them. They are part of the courageous group that we see here 

today. 

Now, I am a father of ten grandchildren. The oldest is 11, the 

youngest is a year and 3 months. Nothing concerns me more than 

the health of those children. I try to focus my activities here on 

things that are good for children’s health and protection and better 

environment and protection against violence and protection against 

drunk drivers on the road. Anything that can protect young people, 

I support. And it is our job as Senators to give every child in America the best opportunity to realize their dreams. 

When I look at these faces, it is an inspirational day, as opposed 

to looking at grumpy Senators that I see almost every morning. 

[Laughter.] 

But we are pleased that you are all here. You look wonderful. We 

want you to feel as good as you look. 

7

I don’t know how anyone can look into the eyes of a child who 

has a disease like diabetes and say to them that we aren’t doing 

everything in our power to find a cure. I am ashamed of that, and 

I wish that we could change things around. But that is exactly 

what some people are telling these young people and the half-a-million other Americans who live with juvenile diabetes. 

Stem cell research can help us gain a better understanding of diabetes and other diseases that affect more than 100 million Americans—cancer, heart disease, Parkinson’s, Alzheimer’s—the diseases 

that afflict the young and the old. We can do something about 

these if we use the tools that we have at hand. 

The time has come to expand the current policy on human embryonic stem cells so scientists and doctors in America can continue 

to make strides toward cures and treatments. That is what we 

want to do. Two years after the President announced his policy on 

stem cell research, only 19—and I don’t want to confuse this with 

little details—stem cell lines, very few are available to be used by 

federally funded scientists, and all of these lines have already been 

contaminated and will never meet the standards required for 

human treatment. But they are there for experimentation and research. 

The House of Representatives has voted to expand Federal funding for stem cell research. The Senate would support that, as well, 

but as you adults in the room, older people, have heard, we have 

had long debates about judges here and about what kind of a process we should use to move things along or not move them along. 

Here, we have this program in front of us, and all it needs, very 

simply, is a vote in the U.S. Senate. There are 40 cosponsors of a 

bill that came from the House of Representatives that wants to 

make available stem cells to be used for research and funding to 

take care of the program. It is not a partisan issue, and I don’t 

want to speak for any other Senator, but Republicans and Democrats are in favor of expanding stem cell research. 

I asked our Majority Leader, who is a physician and a kindhearted physician, someone who has flown to Africa to do heart 

work on people who normally wouldn’t even have a doctor available, but he and we disagree on the process. I would urge him, and 

I would wish that he could walk in this room and look at your 

faces, and I guarantee you one thing. He would never say no in 

front of this audience, I promise you that. So I urge him, let the 

Senate vote on this issue. 

I can’t think of anything more important to these families, these 

children, or to the families of the millions of other Americans who 

are living with diseases that can be cured by stem cell research. 

I once again commend the Chairman for making that point in her 

opening remarks. How can we look into your eyes and deny you 

that hope and that opportunity? It is a question I can’t answer, but 

I wish they were here to answer it in front of you. 

Thank you very much, Madam Chairman. 

[Applause.] 

Chairman COLLINS. Thank you. Senator Chafee, we are delighted 

to have you here. 

8

1The prepared statement of Ms. Moore appears in the Appendix on page 31. 

OPENING STATEMENT OF SENATOR CHAFEE 

Senator CHAFEE. Thank you, Madam Chairman. I look forward 

to this hearing very much and welcome all the many citizens who 

are here to testify on this issue. 

We are going to focus this morning on the impact of juvenile diabetes on children and their families and the enormous economic 

cost to our health care system of caring for diabetics, and also 

about the recent breakthroughs in juvenile diabetes research and 

the need for increased research funding and the potential for embryonic stem cell research, as Senator Lautenberg just talked 

about, to provide for new therapies and possible cures. 

Thank you, Madam Chairman. 

Chairman COLLINS. Thank you. 

I am delighted to welcome our first panel this morning. Once 

again, our lead-off witness is Mary Tyler Moore. She is no stranger 

to this cause nor to this Committee. She is probably better known 

to most Americans for her work in film and television, but we know 

her for her remarkably effective advocacy on behalf of those with 

juvenile diabetes. She is, as I mentioned, the International Chairman of the Juvenile Diabetes Research Foundation, and we are 

just delighted to welcome her back again. 

Our second witness is also no stranger to Hollywood. Douglas 

Wick is an Academy Award winning film producer and co-head 

with his wife, Lucy Fisher, of Red Wagon Entertainment, which 

has produced a number of major motion pictures, including the 

soon-to-be-released ‘‘Bewitched,’’ which I just happen to have seen 

last night at a premiere. It is terrific, so I congratulate you for 

that. Mr. Wick’s daughter, Tessa, was diagnosed with Type 1 diabetes when she was 8 years old, and she testified before us at a previous Children’s Congress, so we are delighted to have her back 

here today, as well. 

Next, we will hear from Gary Hall, Jr., a three-time Olympian 

and ten-time Olympic medalist. Mr. Hall holds the title of the 

‘‘World’s Fastest Man in the Water.’’ That is quite a great title. He 

was diagnosed with Type 1 diabetes at the age of 25, at the height 

of his swimming career. He is a real inspiration to all the children 

who are here today. Look how much he has done despite having 

diabetes. Here he is, the fastest man in the world in the water. 

And last, but certainly not least, we will hear from Dr. Allen 

Spiegel, the Director of the National Institute of Diabetes and Digestive and Kidney Diseases at the NIH. He also has testified before us previously, and we are delighted to have him here. He will 

highlight the opportunities in the area of juvenile diabetes research 

and provide us with some examples of the research that has been 

funded by the appropriations that we have discussed. 

So thank you all, and Ms. Moore, we will start with you. 

TESTIMONY OF MARY TYLER MOORE,1 INTERNATIONAL 

CHAIRMAN, JUVENILE DIABETES RESEARCH FOUNDATION 

Ms. MOORE. Chairman Collins and Committee Members, good 

morning. It is a real pleasure to see you again and to thank you 

from the bottom of my heart for everything you have done to help 

9

us find a cure for diabetes in your role as Chairman of the Senate’s 

Diabetes Caucus, including securing additional research funds, 

passing legislation, promoting islet cell transplantation, and standing up for stem cell research. You are a true partner in this cause 

and I am grateful for the invitation to speak this morning. 

We are here once again, in fact, to be honest with you, for more 

years than I ever hoped would be necessary, to talk about the advances that have been achieved and the challenges of finding a 

cure for all people with diabetes. 

In 2003, JDRF’s Children’s Congress was a catalyst for passage 

of the pancreatic islet cell transplantation legislation that you 

championed, Senator Collins. That bill goes a long way to advance 

a promising new therapy that has already enabled hundreds of seriously ill patients with Type 1 diabetes to experience dramatic improvements in their quality of life. 

With JDRF and NIH support, researchers are now aggressively 

working on new transplant protocols that avoid the need for lifelong toxic drugs to prevent rejection. If successful, this research 

will make islet transplantation more suitable for a broader group 

of patients, possibly even including children. I am hopeful that this 

Children’s Congress will serve as a catalyst for advancing other 

promising avenues of research, including, importantly, stem cell research and regenerative medicine. 

I think most of you, or at least some of you, may know that I 

was diagnosed with Type 1, or juvenile diabetes, almost 40 years 

ago. And like every one of these children, I have struggled with my 

disease and confronted its tyranny every day of my life. Now that 

means that I have struggled every day of every one of those years 

to achieve metabolic balance between what I eat, what I do, and 

the insulin that I inject. 

It means I have been forced to test my blood sugar several times 

a day and give myself multiple injections of insulin just to stay 

alive, day after day after day. It means I have been ripped awake 

more times than I care to recall in a state of extreme distress 

caused by life-threatening low blood sugars. Ask my husband, Robert, who wakes up with me in the middle of the night to help me 

fight our 24-hour-a-day battle. 

It means I am not being spared the complications of diabetes. In 

fact, had it not been for several laser treatments on both of my 

eyes, cataract surgery, and a vitrectomy, I would be blind now. I 

have suffered painful nerve spasms and the threat of losing my 

limbs from poorly healing foot wounds. I have battled with peripheral vascular disease, which limits my ability to walk or dance. But 

I have fought back fiercely because to maintain my sense of self, 

I must, just as these children here today have waged their individual battles to deal with the burdens of Type 1 diabetes and do 

whatever it takes because they must. 

I share this with you today not to complain, but because so much 

of what diabetes does to us is hidden from view, and I just believe 

the truth must be told, the reality shared. The difficulties that I 

have experienced are reflected in each of these children who have 

had their childhood stolen from them and who have been forced to 

contemplate a difficult and uncertain future that may all too soon 

include similar complications. For these reasons and so many more, 

10

I have committed myself to JDRF and to doing all that I can to 

finding a cure for Type 1 diabetes and its complications. 

When I became JDRF’s International Chairman 20 years ago, I 

found an organization that truly fulfills the motto ‘‘of the people, 

by the people, and for the people,’’ because we were founded by parents of children with Type 1 diabetes and everything we do is for 

the benefit of people personally affected by diabetes. 

It has been 2 years since our JDRF Children’s Congress delegation last appeared before you. Each time, you have listened and responded to our singular and collective requests for increased Type 

1 diabetes research funding, and I know it is important for you to 

be assured that the research done with JDRF and the Federal Government’s support over these years has resulted in a strong return 

on our mutual investment. Well, the answer emphatically is it has. 

Because of your support and our close collaboration and alignment of goals, we have been able to move promising experimental 

findings into human clinical trials. Right now, I am thrilled to report there are literally dozens of them underway, human trials that 

have already begun to introduce new treatments addressing diabetes at all stages, from reversing long-term heart, kidney, eye, and 

vascular damage all the way to true disease prevention. I am talking about real treatments delivering better lives for people with diabetes. Now let me highlight just a few. 

Doctors are testing new therapies to halt the autoimmune attack 

that causes Type 1 diabetes, and they see tremendously encouraging results. In fact, we are eagerly awaiting results this month 

from a Phase II trial on newly diagnosed Type 1 patients. Based 

on preliminary data, we expect this study will show that a synthetically engineered antibody designed using a naturally occurring 

human protein can stop the progression of Type 1 diabetes by preserving the function of the body’s insulin-producing beta cells. 

In the area of complications, new therapies to treat the disabling 

eye, nerve, kidney, and vascular disorders caused by diabetes are 

also working their way through clinical trials. In the rapidly growing field of regenerative medicine, we have increasing evidence that 

there are ways to grow insulin-producing cells in the laboratory to 

regenerate them in people with Type 1 diabetes. As a result, in 

human trials that will begin this year, researchers will start treating diabetes patients with experimental growth factors with the 

goal of triggering regeneration of insulin-producing cells, essentially helping people heal themselves. 

And, of course, scientists tell us that we should be much more 

aggressively pursuing all forms of stem cell research, in particular 

embryonic stem cells, to help accelerate the delivery of new regenerative therapies like the one I have just mentioned, as well as numerous potential cell replacement treatments relevant to diabetes 

and so many other debilitating diseases. 

We will only be able to do this if the Senate joins the House and 

votes to loosen the restrictions on Federal funding of embryonic 

stem cell research. I would ask that each and every one of you understand the importance of the related legislation that will soon 

come before you. The House of Representatives’ historic passage of 

the Castle-Doggett Stem Cell Research Enhancement Act of 2005 

just a few weeks ago was a milestone for medical research. 

11

Not long ago, former NIH Director Dr. Harold Varmus stated, ‘‘It 

is not unrealistic to say that stem cell research has the potential 

to revolutionize the practice of medicine and improve the quality 

and length of life. We must provide our scientists with adequate 

tools to explore the potential and work toward better treatment 

and cures for people with diabetes, neurodegenerative disorders, 

spinal injuries, heart disease, cancer, and more.’’

As the Senate debates and votes on this stem cell bill, I ask you 

to remember us. Remember the stories we tell about injections, 

blood tests, about seizures, blindness, kidney failure, heart attack, 

amputations and strokes, about tearful nights and worrying parents, about lives altered wholly and completely, about what a cure 

really means to me and these courageous delegates and the millions just like us. 

Much of the progress we have made in research thus far has 

been the result of strong public-private partnership between the 

Federal Government and JDRF. While we are here today asking 

the Federal Government to do its part in helping to fund research 

to give us a cure, thousands of passionate JDRF volunteers around 

the country raise private dollars toward the same effort. 

Since our founding in 1970, JDRF has given nearly $1 billion to 

diabetes research, and we have just launched a campaign to raise 

$1 billion more in the next 5 years to accelerate the delivery of 

therapies in all the areas that I have just mentioned. 

As before, however, we need the Federal Government as our 

partner. We are falling short of what the experts say is needed to 

get us to a cure as quickly as possible. The congressionally mandated Diabetes Research Working Group recommended a $1.6 billion budget at NIH to fund its share of all the extraordinary opportunities in this area. However, actual NIH funding today is only at 

approximately 65 percent of this goal. We must do better. We can, 

and with your confirmed support, I know we will. We deeply appreciate the commitment and the hope you have provided us in the 

past. 

Madam Chairman and Committee Members, I cannot say often 

enough, diabetes is an all too personal time bomb which can go off 

today, tomorrow, next year, or 10 years from now. That is why we 

are working and doing everything in our power and then some to 

accelerate the cure. To achieve our goal of a world without diabetes, we must continue to work together as a Nation to fund the research, craft policies, and take bold actions that enable progress 

not merely in small steps, but in big leaps and bounds. 

On behalf of myself and my 150 other fellow delegates, I thank 

you, Senator Collins, and your Committee for your unrelenting perseverance and leadership in the effort to make a cure for diabetes 

a national priority. I know that with all of us working together, we 

will fund it. Thank you. 

Chairman COLLINS. Thank you for your eloquent testimony. 

Mr. Wick. 

12

1The prepared statement of Mr. Wick appears in the Appendix on page 34. 

TESTIMONY OF DOUGLAS WICK,1 FILM PRODUCER AND COHEAD, RED WAGON ENTERTAINMENT 

Mr. WICK. Thank you, Senator Collins, for your tireless efforts. 

Thank you, other Committee Members. Thank you, kids and your 

families, and particularly the other dads. 

A few years ago when my family first came to the Children’s 

Congress, it was like looking in a strange mirror. Everywhere, we 

saw other families with diabetes. All around us, children were 

pricking their finger, filling syringes, injecting themselves, and in 

every father, I saw myself. I realized I was part of a new tribe that 

was more defining than my race, my religion, or my economic status. I was a father of a child with an incurable disease. 

In the weeks before our daughter, Tessa, was diagnosed, I was 

a guy with a great sense of possibility. I was about to make a 

movie about Second Century Rome, and I was searching the world 

to find the right place to build the ancient Coliseum for the movie 

‘‘Gladiator.’’ Our family had just returned from Christmas in Hawaii, and while we were there, our youngest daughter, Tessa, 

seemed unable to quench her thirst. She was gulping whole bottles 

of Evian, and we thought something was wrong. 

When we went home, we went to see our doctor, and he said, 

‘‘Your child has diabetes.’’ It was that fast. But it wasn’t until the 

afternoon that the reality came crashing onto me. I had gone to 

Tessa’s school to pick her up to take her to the hospital. We loved 

that school. It was a place where the three sisters had been young, 

where I had learned about being a parent. It was a place of safety 

and protection. I went to Tessa’s class to pick her up and I took 

her to the office to sign her out and there was a form, a place 

where you had to fill in the reason for having her leave early. I 

didn’t know what to put, and I finally wrote ‘‘medical.’’ It was the 

first time that I cried. 

That night, I sat on Tessa’s bed and tried to explain her new life 

to her. We used to call her ‘‘Frat Girl’’ because she was always in 

a good mood, but that night, she wasn’t. She had had five shots 

that day, and she said, ‘‘Will I have to have any more shots?’’ ‘‘Yes,’’ 

I answered. ‘‘How many?’’ ‘‘Two a day or more.’’ ‘‘For how long?’’ ‘‘I 

am not sure.’’ ‘‘But for how long?’’ ‘‘Well, as of right now, forever.’’

As I sat on Tessa’s bed, she told me that she no longer believed 

in God because if there was a God, he wouldn’t do this to kids. I 

have never felt more like a failure as I sat beside her. I was her 

dad. I was supposed to make things OK. I was supposed to keep 

her safe. I promised her somehow, some way, we would find a cure. 

That was 6 years ago. 

My wife and I felt alone and afraid. Tessa was shy and self-conscious and didn’t want the other kids at school to know. She didn’t 

want to be different. But the word got out, and the word got out 

that Tessa was in trouble. The next day we went to school, and as 

she went to test her finger, prick her finger, there was a protective 

circle of children around her, and they never left. 

These kids have walked mile after mile for diabetes, with Tessa’s 

two sisters leading the way. They have sold hundreds of glasses of 

lemonade, squeezed money from their parents, and pounded on 

13

1The prepared statement of Mr. Hall appears in the Appendix on page 38. 

every neighbor’s door with a simple plea, ‘‘Our friend has diabetes, 

and we are going to get a cure.’’ Tessa found her proof of God all 

around her on the shining faces of these friends. 

When she was 10, Tessa testified before this Committee. She was 

feeling very hopeful. But as she waited for her turn, like all of you, 

she heard details about her disease that we had tried to minimize—kidney failure, amputation, and blindness. Once again, I 

asked myself, what future could I offer my child? 

I reached out to my friend, Nancy Reagan. My father, Charles 

Wick, had served in the Reagan Administration for 8 years. When 

the Reagans came home to Los Angeles, I had watched Mrs. 

Reagan robbed of her golden years where she intended to sit on the 

porch of the ranch, reminisce about Washington and the likes of all 

of you. But Mrs. Reagan was determined to spare other families 

her fate. 

Together, we sought out the most respected scientists and researchers, and we were amazed at the consensus. The best brains 

in medicine and science, including the vast majority of Nobel Prize 

winners, were convinced about the promise of embryonic stem cells. 

The day President Bush was to announce his position on Federal 

funding for stem cell research, our whole family sat around the TV 

waiting. As the President announced his new policy, my wife, who 

always kept her chin up for the children, started to cry. 

The dreadful complications of diabetes, as you all know, can start 

after 5 years. Last year, we passed our 5-year mark. Now every 

time we go to the doctor, Tessa has a kidney test and an eye test, 

and after the visit, as we wait for the results, we are scared. 

I am here today to beg you for my daughter’s future and the future of these other children. Please let me tell my daughter that 

the Congress of the United States will use its might and heart to 

pursue every avenue of the science that can restore her health. 

We can make movies about ancient Rome, where men like 

Maximus can rise up, sword in hand, to fight for good. But even 

Maximus can’t save Tessa or any of these children. These children 

need a different kind of hero, one wearing not a toga but a suit or 

a dress, and one who will fight not in the arena but on the floor 

of the Senate for their health and their futures. Thank you. 

Chairman COLLINS. Thank you for your very moving testimony. 

Mr. Hall. Thank you. 

TESTIMONY OF GARY HALL, JR.,1 OLYMPIC GOLD MEDAL 

SWIMMER 

Mr. HALL. Good morning. It is an honor and a pleasure to appear 

before this Committee today to speak about the way juvenile diabetes has impacted my life and the need to find a cure as soon as 

possible. I want to first thank you, Senator Collins, for all you do 

as Co-Chair of the Senate Diabetes Caucus and for holding today’s 

hearing. 

My name is Gary Hall. Most people know me from my swimming 

achievements in the Olympic games. I am a three-time Olympian, 

a ten-time Olympic medalist, and hold the record as the fastest 

swimmer in U.S. history and in organized competition worldwide. 

14

Swimming is in my genes to some extent. My father, Gary Hall, 

Sr., was also a three-time Olympian for the United States. I started 

swimming seriously when I was 14, and won my first national title 

at the Junior National Championships. I continued my success at 

the University of Texas in the mid-1990’s and swam at the 1996 

Olympic Games in Atlanta, where I won four medals. I was feeling 

very good about my life and where it was going. 

But in 1999, I noticed an unsettling change coming over me. I 

was feeling tired all the time. I had a constant thirst I could not 

quench. My vision became blurry, and finally, I collapsed. This is 

when I was diagnosed with Type 1 diabetes. 

The news was a shock, and I was incredibly upset and discouraged. Since there was no history of the disease in my family, you 

can imagine my disbelief. At the time, I really didn’t have a good 

understanding of what diabetes was. Like a lot of people, I thought 

it happened to those people who were older and who had neglected 

their health for many years and didn’t get enough exercise. I just 

didn’t understand how this could have happened because I, on the 

other hand, had spent my entire life eating right, exercising, and 

minding my health. 

After the diagnosis, the first thing I did was go home to my computer and look up as much on the disease as I could find. I learned 

that my pancreas had been attacked by my own immune system, 

preventing me from converting food into energy. I also learned that 

I would have to take insulin shots for the rest of my life just to 

stay alive. 

As far as competitive swimming went, I had no idea if I would 

be able to continue. It was an earth shattering moment for me because I had gone through so much and felt that I was at the peak 

of my physical condition. 

My diagnosis came one week before I was to compete in that season’s biggest meet, the Spring National Championships, and all I 

could do was go away and clear my head. I ended up going to the 

mountains of Costa Rica with my wife, Elizabeth. She was incredibly supportive in helping me get through this life-altering week. 

In Costa Rica, I did a lot more reading about diabetes to gain an 

even deeper understanding of the disease. It was frightening. I 

read about people going blind, losing their legs and their kidneys 

to diabetes. For me, it was just a matter of when. 

Sometimes, the burden of knowing what the disease could do 

made me feel destructive. At times like this, I would swim offshore 

into shark-infested waters until land was out of sight. I would turn 

around and swim back. But as time passed, I came to terms with 

my disease and knew I needed to accept the circumstances, and I 

decided that I had the opportunity to do something to educate people about the horrible effects of diabetes and the desperate need for 

a cure. 

When I returned to the United States, I got in touch with Anne 

Peters, a Los Angeles endocrinologist, who assured me there was 

no reason to quit competitive swimming. I decided to go back into 

serious training, but with a new attitude toward everything. If 

there is a bright side to this, it is that I no longer take anything 

for granted, in swimming or in life in general. I live every day as 

if it is going to be the last. 

15

I am happy to say that since my diagnosis, I have continued my 

swimming success, winning four more medals at the 2000 Olympic 

Games in Sydney and another two in 2004 in Athens. But I have 

also realized I can make an even bigger impact for people with diabetes. I have had a chance to encourage millions of people living 

and suffering with this disease. If I could talk about what I went 

through and what I have still been able to achieve, I might somehow alleviate the feeling of helplessness and defeat that can overcome a person, more often than not a child, when diabetes is first 

diagnosed. 

Soon after my diagnosis, I became active with the Juvenile Diabetes Research Foundation and have been a staunch advocate for 

their research efforts. I am proud to be here today with these 150 

amazing children you see sitting before you, telling you why you 

must do everything in your power to help find a cure through the 

best science available to America. 

Diabetes is always with us. It is not something you can take a 

vacation from, even for a day. We have to test our blood sugar as 

often as 10 to 12 times every day, and we rely on insulin as life 

support. It is a delicate balancing act. We have to constantly calculate the number of carbohydrates we eat, the amount we exercise, and the number of insulin injections we need to take to keep 

our blood sugar levels in normal range. And still, we lead a life in 

which we are never more than a few minutes away from a dangerous change in blood sugar levels or the longer-term risks of lifethreatening complications. 

You all have the power that many of us envy, the ability to control public funds and public policy. We need more funding from 

Congress for diabetes research so that researchers can take full advantage of all the scientific opportunities that currently exist that 

may lead to a cure. 

In addition, it is extremely important that you help expand the 

current policy on Federal funding for embryonic stem cell research. 

Embryonic stem cells represent one of our best hopes for curing 

Type 1 diabetes, and it is disheartening for those of us with the 

disease to see progress delayed by limiting what research can be 

done with Federal funding. When I swam in the Olympics, I always 

tried to be the best in the field, not for myself, but because I was 

representing my country. The United States has historically been 

the best and a world leader in scientific discovery. It is incredibly 

frustrating to see the United States falling behind other countries 

in this promising area of science. 

I know first-hand that it is possible to achieve your dreams, even 

in the face of adversity. I ask that you look around this room at 

these brave children who struggle to overcome the adversity of diabetes every hour of every day. These kids represent future teachers 

and doctors, businessmen and businesswomen, mothers and fathers, maybe even a future Olympic athlete or U.S. Senator. In 

short, they represent our future. 

Please help us to ensure that our collective future is bright by 

doing all you can to remove the cloud of diabetes that hangs over 

these children. Join us in educating Members of Congress about 

the incredible research opportunities that exist to develop therapies 

16

1The prepared statement of Dr. Spiegel appears in the Appendix on page 41. 

and a cure for juvenile diabetes, including the potential of stem cell 

research. 

Thank you for the opportunity to appear before you today. Thank 

you. 

Chairman COLLINS. Thank you very much for your inspiring testimony. 

Dr. Spiegel, welcome. 

TESTIMONY OF ALLEN M. SPIEGEL, M.D.,1 DIRECTOR, NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES, NATIONAL INSTITUTES OF HEALTH, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Dr. SPIEGEL. Thank you. Chairman Collins, Senators Lieberman, 

Chafee, and Lautenberg, I appreciate the opportunity to testify before you on the research efforts of the National Institutes of Health 

(NIH), directed toward improving the lives of people with Type 1 

diabetes with the ultimate goals of curing the disease and preventing it in those at risk. 

On behalf of my colleagues at NIH, I wish to express my appreciation to Congress for the support you have provided in funding 

NIH, and in particular for the Special Type 1 Diabetes Research 

Funding Program. I acknowledge our accountability to you for how 

we have used these funds and our accountability to the children 

and families here whose hopes for a better future depend on what 

we accomplish with these funds. 

I have submitted for the record a detailed written statement, but 

here I will summarize some of the research accomplishments, challenges, opportunities, and our plans to address them. 

I thought I could most readily convey the challenges of Type 1 

diabetes using the image of life as an ocean voyage on a large ship. 

Every parent’s wish for his or her child is a comfortable, productive, and long passage. Unfortunately, serious diseases can prematurely terminate that passage, and that is exactly what Type 1 

diabetes did before the discovery of insulin in the 1920’s. Striking 

children and teens, it in essence caused them to fall overboard 

without a life preserver because there was no effective treatment. 

Even someone with the swimming ability of a Gary Hall, Jr., would 

not have survived then. 

Insulin provided a life-saving treatment, but it did not represent 

a true cure. With insulin treatment, one had to worry every moment of one’s life about blood sugars being too high, leading to complications such as blindness and kidney failure, or blood sugar 

being too low, causing coma and even death. In essence, on insulin 

treatment, people with Type 1 diabetes were safe from drowning, 

but they were consigned to make the ocean voyage on a small lifeboat, laboriously trying to avoid ocean hazards doing the routine 

things in life most of us take for granted. 

Over the years, research has led to steady improvement in the 

length and quality of life of people with Type 1 diabetes. Newer 

forms of insulin developed using biotechnology, more accurate glucose monitoring developed by bioengineers, all help achieve better 

blood sugar control. That is key, because NIH research showed 

17

clearly that tight control of blood sugar could significantly reduce 

the development of small blood vessel damage, leading to blindness 

and kidney failure. 

Just 2 weeks ago, investigators from our EDOIC study of nearly 

1,400 people with Type 1 diabetes reported that tight blood sugar 

control cut in half the occurrence of serious heart disease, the leading cause of death in Type 1 diabetes. All of this progress, though, 

still leaves people with Type 1 diabetes in that lifeboat. It is a better equipped lifeboat, able to travel much longer and avoid many 

hazards, but it is still not where we want to be. 

We need to get children with Type 1 diabetes back on that large 

ship, no longer worrying around the clock about eating, exercising, 

and blood sugar. We need a cure. 

The opportunities have never been greater. One line of research 

seeks to develop a closed-loop system, an artificial pancreas. Early 

NIH investments in glucose-sensing technology have spurred industry efforts to develop continuous glucose monitoring and to connect this with automated insulin delivery. DirecNet, a clinical network supported by the Type 1 funds, studies the latest continuous 

glucose monitoring technology in kids just like these to improve 

their treatment and help speed development of an artificial pancreas. 

It is unlikely, though, that any mechanical system will ever attain the performance of the pancreatic islets whose beta cells normally sense a rise in blood glucose and release insulin in response. 

Proof of that came from the pioneering Edmonton protocol which 

showed that islet transplantation could lead to sustained independence from insulin treatment in adults with Type 1 diabetes. This 

left us, though, with two major hurdles to overcome, achieving 

transplant tolerance without the need for life-long immunosuppressive drugs, and finding an inexhaustible supply of insulin-secreting 

beta cells. 

To overcome the first hurdle, NIH’s Immune Tolerance Network 

and the newly formed Collaborative Islet Transplant Consortium 

seek to develop better ways to achieve transplant tolerance and 

long-term insulin independence. 

For the second hurdle, our Beta Cell Biology Consortium brings 

together the best researchers in the country to study both adult 

and federally approved embryonic stem cells with the goal of developing a source for cell replacement therapy. 

To truly achieve success, though, we need to be able not only to 

cure, but also prevent Type 1 diabetes. In essence, we need to prevent kids at risk of the disease from ever falling off that large ship. 

To do that, we need to know the genetic and environmental determinants of the disease, and the Special Type 1 Diabetes Funding 

Program has enabled us to form consortia to achieve these goals. 

We need to understand in detail why the immune system attacks 

its own pancreatic islets and to harness that information to develop 

safe and effective prevention methods. 

Our research now allows us to identify those at high risk before 

they actually develop Type 1 diabetes. Recent results show that insulin itself is a key trigger of the autoimmune process, not just in 

mice, but in people. Though experiments in animals show that insulin given at just the right time could prevent the disease, our 

18

DPT–1 trial, unfortunately, failed to show a benefit of injected insulin in people. A possible beneficial effect seen with oral insulin, 

though, will be carefully reexamined in our TrialNet Consortium, 

which is also doing other pilot prevention studies. 

An antibody against immune cells has shown promise in preserving beta cell function in adolescents with recent onset Type 1 

diabetes, and a controlled study to be published later this week reinforces that promise. We must be clear, though, that any cure or 

prevention method will have to be not only effective, but safe in 

both the short and long-term. While we don’t want to leave kids 

with Type 1 diabetes stuck in that lifeboat forever, it is certainly 

preferable to ending up overboard because of unsafe interventions. 

Developing safe and effective cure and prevention methods involves making tough decisions. To be certain we make the right 

ones, this January, I launched a new strategic planning process 

with extensive input from external scientific experts and patient 

advocacy groups such as the JDRF. We expect this plan to serve 

as a guide, allowing us to use our resources most effectively in addressing the challenges before us. 

Chairman Collins, Senators Lieberman, Chafee, and Lautenberg, 

Children’s Congress delegates and your families, distinguished 

guests, I hope you can appreciate that my colleagues I and at NIH 

and the researchers we represent are fully committed to this cause. 

You deserve nothing less. Thank you for your support and your attention. 

Chairman COLLINS. Thank you, Doctor, for that encouraging 

data. 

We have a bit of a time problem this morning because there is 

an unexpected vote that has been scheduled for 11 o’clock, and I 

want to make sure that we get to hear from all of our witnesses 

on the next panel. I am therefore going to ask my colleagues to 

only ask one question so that we can make sure we can get through 

the next panel. That is very hard for Senators, to only ask one 

question, especially when we have such an extraordinary panel before us. 

Mr. Wick, I am going to direct my one question to you. You mentioned in your testimony the work that you are doing with Nancy 

Reagan and the promise that embryonic stem cell research holds 

for diseases like Alzheimer’s, Parkinson’s, spinal cord injuries. 

Could you elaborate for us on the promise of stem cell research for 

providing treatments or a cure for juvenile diabetes, because we do 

expect within the next month to have that important debate on the 

Senate floor. 

Mr. WICK. Yes. As we started our exploration, obviously, I was 

searching as a father with a diabetic child and she was searching 

as a wife who had just lost her husband to Alzheimer’s and suffered through his decline, but she is also, as you know, the daughter of a doctor and very interested in medicine. 

So we met with several different scientists and also met with 

people independently, and we would compare notes, and what we 

got, and we were surprised, was how much consensus we heard 

really from, as you know, the vast majority of Nobel Prize winners 

and a huge majority of the most gifted medical people in the country, and they all said embryonic stem cell was certainly the best 

19

shot for diabetes, would have some major impact on Alzheimer’s, 

at worst, at least understanding the disease. And then my friend, 

Michael J. Fox, who I did ‘‘Stuart Little’’ with, has Parkinson’s. 

And everywhere I turn, other families with diseases were finding 

embryonic stem cell was their hope. Of course, they need more 

stem cell lines. 

Chairman COLLINS. Thank you. Senator Lieberman. 

Senator LIEBERMAN. Thanks, Madam Chairman. Now that you 

and I have worked together to protect the right of filibuster on the 

Senate floor—— [Laughter.] 

We can limit ourselves to one question here. 

First, to all the witnesses, thank you for very compelling and effective testimony. 

I am going to ask a quick question of Dr. Spiegel. In your written 

testimony, you cite six research goals for NIH. I want to ask you 

if you would identify what the most significant challenge is now 

that you are facing to the kind of progress that we want to see. 

Dr. SPIEGEL. Thank you, Senator Lieberman. Indeed, the two 

major hurdles I described are the significant challenges. One is to 

understand the basis for the immune system attack on these pancreatic islets. Understanding that will not only potentially allow us 

to cure the disease in those who have it, reverse it in those with 

recent onset, but also prevent it in those at risk. 

At the same time, for the cure of Type 1 diabetes, cell replacement therapy is challenging. This is, of course, where the stem 

cells come in. This is potentially extremely important. In this regard, we need to be able to learn how to grow many of these insulin-secreting beta cells in a dish, and this can be done. Scientists 

are working on it. Doing that kind of work will also allow us, as 

Mary Tyler Moore so eloquently said, to learn how to help regenerate the beta cells that are in the body and still functioning, even 

in some people with longstanding Type 1 diabetes, to a limited degree. 

Senator LIEBERMAN. Thank you. 

Chairman COLLINS. Thank you. Senator Chafee. 

Senator CHAFEE. I thank the Chairman. I am sure the many people standing in back, the families standing in back, are grateful for 

short questions and answers also. 

Dr. Spiegel also—and I thank the entire panel for your moving 

testimony—what kind of experience do you have on the private 

funding for embryonic stem cell research versus the public funding 

and the Federal funding? Is the private funding significant? 

Dr. SPIEGEL. Certainly there is private funding for embryonic 

stem cell research. We work very closely in conjunction with the 

private sector, and this relates to Senator Lieberman’s comments. 

The only way that we can make progress is for the federally supported researchers and for the NIH to work together with the private sector. 

In this instance, while there are private efforts, we are somewhat 

shielded from those and so I can’t really give you my experience. 

I meet with CEOs on an even, level playing field, working on areas 

like trying to prevent Type 1 diabetes with promising treatments. 

But in the arena of human embryonic stem cell research, there is 

a wall. 

20

Chairman COLLINS. Thank you. Senator Lautenberg. 

Senator LAUTENBERG. Thank you again, Madam Chairman, for 

bringing this panel in front of us. Before I ask my question, I just 

say thank you to each one of you, particularly the three who have 

been personally touched by juvenile diabetes, for your moving testimony. 

As such, my question is for our distinguished Chairperson, and 

that is I don’t know whether there is a video of the testimony that 

we heard this morning, but I would be willing to get together and 

try to devise an opportunity or develop an opportunity for all the 

Senators to see and hear the testimony as presented. It is an eloquent statement, and I say shame on us if we don’t do something 

about this. 

Look at these children, the most beautiful group of children that 

I have ever seen. Here they are, as Mr. Hall said, they have to 

learn that there is hope and there is opportunity for the future. 

Your example is one of the finest things that we could imagine, and 

that is get through it. Get on to a normal life and let these kids 

know there is that. 

Dr. Spiegel, and I am cheating on the one question thing because 

questions to the Chairman don’t count, but—— [Laughter.] 

Dr. Spiegel, how do you respond to claims that adult stem cells 

are a sufficient or an appropriate replacement for embryonic stem 

cells in treating diseases such as those that have been discussed 

here this morning, particularly diabetes? 

Dr. SPIEGEL. My response unequivocally is that we need both. 

And as you have heard, not only most scientists, Nobel Laureates, 

and others agree we need both. We need to pursue both avenues 

because that is our best hope of being able to learn how to cure this 

disease. We need to be able to do embryonic stem cell research—

first, because it can give us a better understanding of what causes 

Type 1 diabetes; second, because it will actually inform our ability 

to work with adult stem cells as well as to stimulate endogenous 

regeneration; and finally, because, and one cannot guarantee or 

promise this, the embryonic stem cells themselves, if successfully 

turned into insulin-secreting beta cells, could be the source of cell 

therapy. So there are at least three reasons. 

Senator LAUTENBERG. Thank you very much. Thank you, Madam 

Chairman. 

Chairman COLLINS. Thank you, and thank you, Dr. Spiegel, for 

putting that on the record. 

I want to thank this panel for your excellent testimony. Senator 

Lautenberg is right. I think it would benefit all of our colleagues 

to hear it. I know that many are watching from their offices, but 

his idea of sending around a tape is an excellent one, and we will 

follow up on that. But thank you so much for being here and for 

your eloquent testimony. Thank you. 

[Applause.] 

Our next panel of witnesses this morning consists of children 

who know firsthand the burden of living with diabetes. Our witnesses on this panel are Stephanie Rothweiler of Falmouth, Maine; 

Ethan Falla of New Britain, Connecticut; Aaron and Shaynah 

Jones of Piscataway, New Jersey; Ellie Clark of Grandville, Michigan, accompanied by her mother, Katie; and Lauren Stanford of 

21

Plymouth, Massachusetts, who is the Co-Chair for the children at 

this year’s Congress. 

All of the members of this panel are delegates to the Juvenile Diabetes Research Foundation’s Children’s Congress. Other delegates, 

I want to point out, are seated right before us and also are 

throughout the room. We welcome all of them here today. 

Now, two of my colleagues have very important constituents who 

are testifying before us on this panel, so first, I want to turn to the 

distinguished Ranking Member, Senator Lieberman, so that he can 

welcome our witness from Connecticut. 

Senator LIEBERMAN. Thanks, Madam Chairman. I will be brief 

since I welcomed him in my opening statement. Ethan Falla is just 

an adorable red-headed kid from New Britain, Connecticut. He is 

a member of the school Honor Society, very active in sports, and 

as I mentioned, an accomplished Irish dancer. 

Ethan, thanks so much for coming today, and I hope during your 

testimony you will share with everyone here today your poem 

about diabetes. That would be very important for everyone to hear. 

God bless you. You look great and you have a great future ahead 

of you. 

Chairman COLLINS. Thank you very much, Senator Lieberman. 

And now, I would like to turn to Senator Lautenberg so he can 

have the privilege of introducing his constituent, as well. 

Senator LAUTENBERG. It is a privilege, indeed. I would say that, 

in response, Senator Lieberman always says the right thing, and 

he talks about how terrific Ethan is. But I want you to look at 

Shaynah and Aaron, and I will tell you that you would not see a 

more handsome, full of life pair of young people. I can’t help but 

look at all of the young people out there, including little Ellie, and 

all of the children. They stimulate something in our souls and our 

hearts that tells us we have to do something about this. 

And I am particularly grateful to Shaynah, who is 13 years old, 

diagnosed with juvenile diabetes 2 years ago, and Aaron, 10, diagnosed 5 years ago. It is a burden on their families, a burden on 

themselves, but they are two happy children with interests like any 

other child—sports, school band, video games—but their lives, as 

we have heard from so many, are affected every day by diabetes. 

But I hope you heard Gary Hall’s message, too, and that is he went 

on to become this great swimmer after he was diagnosed with diabetes. So whatever your plans are, keep going, Shaynah and Aaron. 

I look forward to hearing your stories. Thanks for sharing them 

with us, and thank you, Madam Chairman. 

Chairman COLLINS. Thank you, Senator. 

Steffi, as I told you yesterday in my office, you get to go first. 

That is not only because I was so impressed with you yesterday 

when we met, but it is because I am the Chairman. [Laughter.] 

And thus, I get to pick the person, and I am picking my constituent. So Steffi, take it away. 

22

1The prepared statement of Ms. Rothweiler appears in the Appendix on page 58. 

TESTIMONY OF STEPHANIE ROTHWEILER,1 DELEGATE (AGE 

11), JDRF CHILDREN’S CONGRESS, FALMOUTH, MAINE 

Ms. ROTHWEILER. Good morning, Senator Collins and Members of 

the Committee. My name is Stephanie Rothweiler. I am 11 years 

old and live in Falmouth, Maine. 

These days, all I hear is, ‘‘Steffi, what is your blood sugar?’’ or 

‘‘Steffi, how much insulin are you going to give yourself?’’ Well, I 

wasn’t always this way. I got diabetes when I was 51⁄2. It was a 

week before Christmas in 1999. Thankfully, my family and I 

caught it early. Once you saw me, it wasn’t hard to see that I was 

really sick. I had dark circles around my eyes, I had lost a lot of 

weight, and I looked like a twig. I was also always really tired, 

thirsty, and I couldn’t stop going to the bathroom. 

Let me tell you about my typical day living with diabetes. When 

I wake up, the first thing I do is check my blood. If it is out of 

range, that determines what I can eat for breakfast. When I am at 

school, I call the nurse three times a day—at snack, lunch, and before I go home—to report my blood sugar numbers. I also have to 

carry a blood testing meter with me at all times. On school trips, 

one of my parents has to come with me and if that is not possible, 

one of the school nurses has to go. My friends have learned what 

to do if I should become unconscious and how to help me. 

Eating is a big problem. If my blood sugars are too high, I can’t 

eat with my family and have to wait 20 to 30 minutes for the insulin to work. I am very active with tennis, Irish dancing, and softball. My whole family has learned how to count carbohydrates, 

know their glycemic index, and evaluate the impact of my exercise 

on my blood sugar levels. Every day, at every meal, activity, and 

during the night, my parents are calculating and projecting my 

blood sugar levels to keep me in good control. 

At first, I thought diabetes was like a cold and that it would be 

gone in a week or so. Little did I know I would have it the rest 

of my life. I actually can’t remember having a normal life without 

diabetes. 

I have learned a lot about life that I may not have learned if I 

did not have this disease. One thing I have learned is how fortunate I was to have caught the diabetes early. I also know how 

lucky I am to have parents who give up their nights, weekends, 

and every hour of every day to take care of me and to make sure 

I stay in tight control of my blood sugar levels so I can stay as 

healthy as possible. I am also very lucky to have access to the best 

technologies. I wear an insulin pump, which makes it easier to stay 

in good control. 

I know it is possible to find a cure. I think about all of the miraculous advances that have occurred in our time, and I know that a 

cure will only come from research. So I ask each Member of this 

Committee and every Member of Congress to do all they can do—

to do all they can to support this promising research that will one 

day bring us a cure as quickly as possible. 

Senator Collins, I owe you a special thanks for all you have done 

to support the research and policies to bring us closer to finding a 

cure for diabetes. I am also very lucky you are my Senator. 

23

1The prepared statement of Mr. Falla appears in the Appendix on page 60. 

I can’t remember my life without diabetes, but I can certainly 

imagine how wonderful it would be to live without it. 

Chairman COLLINS. Thank you so much, Steffi. That was just 

great. Let us give a round of applause for Steffi. 

[Applause.] 

Ethan, you are next. 

TESTIMONY OF ETHAN FALLA,1 DELEGATE (AGE 13), JDRF 

CHILDREN’S CONGRESS, NEW BRITAIN, CONNECTICUT 

Mr. FALLA. Hi. My name is Ethan Falla. I live in New Britain, 

Connecticut. I am 13 years old, and I am like most other boys my 

age. I love to play sports, ride my bike, play video games, and I 

Irish dance. The difference between me and all my friends is that 

I have juvenile diabetes. 

I have a really good memory and I can remember things most 

people forget. I can remember when I was 3—like it was yesterday. 

Sometimes I wish I could forget certain times in my life, like the 

day that I was diagnosed with diabetes. I was really afraid of the 

shots and the way that everyone acted. My mom couldn’t stop crying and my dad looked really worried. I remember running behind 

the couch to hide from my mom and dad when they had to check 

my blood sugar or give me insulin. Those days were the hardest. 

One night when I was 4, I told my dad that by the time I was 16, 

there would be a cure for diabetes. Well, that only leaves 3 years 

for us to find a cure. 

The reality of diabetes really hit home for me 2 years ago when 

my little brother, Aiden, was diagnosed with diabetes. I felt really 

bad because I thought it was all my fault. I cried the whole time 

he was in the hospital. I just couldn’t imagine him having to go 

through all the finger sticks and shots, too. He was only 10 months 

old and it wasn’t fair. Although I worry about myself, I worry more 

about my little brother, Aiden, because he is so little and so many 

things can go wrong. 

The dream I have for me, my brother, all the kids in this room, 

and all the other children around the world who have diabetes is 

simple. At night, I dream of a world where we don’t have to count 

carbohydrates or we don’t have to prick our fingers and give ourselves insulin shots, or we don’t have to worry every day about the 

complications of diabetes, a world where we could just be kids, free 

from diabetes. 

Research foundations like JDRF are working hard to make that 

dream become a reality with support from Congress. If we all work 

together to find a cure, it will happen. Together, we will be known 

as the people who cured diabetes. 

Chairman COLLINS. Thank you, Ethan. 

[Applause.] 

Aaron, we are delighted to have you and your sister here, too. 

24

1The prepared statement of Mr. Jones appears in the Appendix on page 62. 

2The prepared statement of Ms. Jones appears in the Appendix on page 63. 

TESTIMONY OF AARON JONES,1 DELEGATE (AGE 10), JDRF 

CHILDREN’S CONGRESS, PISCATAWAY, NEW JERSEY 

Mr. JONES. Good morning. My name is Aaron Jones, and I am 

10 years old. I was diagnosed with juvenile diabetes when I was 

four. I have been living with this disease for 6 years. My older sister, Shaynah, has just been diagnosed, too. 

My mom doesn’t know how or why we both got juvenile diabetes 

because we are the only ones in our family who have it. Even 

though I am younger than Shaynah, sometimes I feel like her big 

brother because every time she needs help understanding her diabetes, I tell her what I know. Shaynah gets nervous because she 

knows that I sometimes have seizures because of my diabetes and 

she doesn’t want to get them, too. We also both worry about our 

older brother, Justin, and our younger sister, Kara, worry that they 

may get this disease, too. 

Living with diabetes is the pits. I live with it because I have to. 

The part I really don’t like is taking insulin shots and always 

checking my blood sugar. It can be painful sometimes. I just don’t 

feel like doing it. I also feel awful and tired when my blood sugars 

get too high or very low. I just want to feel like a normal kid without pricking my fingers 2,000 times each year or injecting myself 

with insulin 1,100 times a year. 

Finding a cure is what keeps me smiling every day. Please help 

us find a cure in time to help me and my sister, Shaynah, and all 

the other kids who never get a day off from diabetes. 

Chairman COLLINS. Thank you very much. Good job. 

[Applause.] 

Shaynah, we are delighted to have you here, too. 

TESTIMONY OF SHAYNAH JONES,2 DELEGATE (AGE 13), JDRF 

CHILDREN’S CONGRESS, PISCATAWAY, NEW JERSEY 

Ms. JONES. I am Shaynah Jones, Aaron’s older sister. I am 13 

years old, and I have had diabetes for 2 years now. Having two 

kids with diabetes in one family really takes a toll on everyone. 

For Aaron and me, managing our diabetes takes a lot of time 

away from our family. If we are with our family at a function, we 

have to stop what we are doing to check blood sugars or go somewhere to inject insulin. If there is a high or low blood sugar with 

one of us, then sometimes we have to cancel what we are doing so 

our parents can take care of us, especially for Aaron. If he goes too 

low, he can have a seizure, and that can be a real emergency. 

The emotional stress of this disease is horrible for our entire 

family. If one of our blood sugars is out of control, it seems like the 

whole family is holding their breath until we get it back in line. 

If we misplace one of our meters, my mom gets upset because the 

numbers might not be right for the doctor. It can become difficult 

because we are stressed out all the time, worrying about whether 

we have everything relating to our diabetes in order, not to mention that we are worrying about just being kids. 

Diabetes is so rough on my whole family. It is a heartache and 

heartbreak every day. Still and all, we wake up every morning 

25

1The prepared statement of Ms. Clark appears in the Appendix on page 64. 

grateful for a new day and with a positive outlook on life. We are 

not giving up. 

Chairman COLLINS. Thank you. Very good job. 

[Applause.] 

Katie, it is my understanding that you are going to speak for 

Ellie, so thank you. 

TESTIMONY OF KATIE CLARK,1 MOTHER, ON BEHALF OF 

ELLIE CLARK, DELEGATE (AGE 4), JDRF CHILDREN’S CONGRESS, GRANDVILLE, MICHIGAN 

Ms. KATIE CLARK. My name is Katie Clark. Most people know 

me as Ellie Clark’s mom. Ellie will be 5 next month. She is a sweet 

little girl who has been barraged since birth with complete strangers touching her blonde curly hair. We thought that was going to 

be her burden to bear. We were wrong. 

Ellie was diagnosed with juvenile diabetes last year. To be exact, 

we found out at 4:45 p.m. on August 30. We had spent weeks denying the symptoms, and with those words every parent here will tell 

you devastated them, ‘‘There is glucose in her urine,’’ our lives 

were turned upside down. She was diagnosed on what was supposed to be her first day at a new preschool. We spent my 30th 

birthday at the hospital and got through the denial in a few hours, 

which most say is really fast. I spent a better part of the next 2 

weeks in a depression. I was also very angry. Anger is not the most 

common emotion at the very beginning. However, we are not new 

to this disease. I have had juvenile diabetes for 28 years. 

It has only been 10 months. Ellie has callouses on her fingers. 

Her bottom has scar tissue from her insulin pump site changes. 

She has had 1,494 finger pokes. Her blood has been drawn five 

times, with two nurses holding her down and one drawing the 

blood. She has had 98 pump site changes. It has only been 10 

months. 

All I want is to give her back the life she was living before August 30 and a future brighter than one clouded by diabetes. I would 

give everything I have, even my own life, for Ellie not to have to 

endure another day of this dreadful disease. 

One of the hardest things for me is knowing firsthand the challenges that Ellie is going to face as she grows up. Fifteen years—

that is how much less of a life span Ellie and I have been dealt. 

And disease is something that affects every detail of every day of 

your life. It is not only about the finger pokes or the worry about 

whether you have enough supplies or when our next meal will be. 

The happiest days of my life have been clouded by diabetes, details 

the average person wouldn’t ever think about. 

I had an insulin reaction on my wedding day. And not only did 

my hair get messed up, but I ended up with orange juice on my 

wedding veil. For each of my pregnancies, I saw a high-risk OB 

once a week. In the 4 months leading up to their births, I saw them 

twice a week. In labor, I was forced to check my blood sugar every 

hour, and after birth, the nurses whisked my newborns away to 

check their blood sugar and force a tube down their throat to force 

glucose into their stomachs because their bodies were used to proVerDate 0ct 09 2002 13:24 Jan 11, 2006 Jkt 022196 PO 00000 Frm 00029 Fmt 6633 Sfmt 6633 C:\DOCS\22196.TXT SAFFAIRS PsN: PAT
26

1The prepared statement of Ms. Stanford appears in the Appendix on page 66. 

ducing too much insulin. This is not the life I have dreamed of for 

Ellie. 

The worst part of diabetes and the biggest impact it has had on 

my life is when Ellie is getting tucked into bed at night. That is 

when she asks the questions that are unanswerable, like, ‘‘Mommy, 

why do some people get diabetes and some people don’t?’’ Or she 

says things like, ‘‘Daddy, I don’t want diabetes anymore.’’ This is 

when I realize we must do everything we can to find a cure for this 

disease. My sweet little girl with the blonde curls deserves it. 

Chairman COLLINS. Thank you. 

[Applause.] 

Lauren, we are pleased to have you here today. 

TESTIMONY OF LAUREN STANFORD,1 DELEGATE (AGE 13), 

JDRF CHILDREN’S CONGRESS, PLYMOUTH, MASSACHUSETTS 

Ms. STANFORD. Good morning. My name is Lauren Stanford. I 

am 13 years old, and I live in Plymouth, Massachusetts. I have had 

diabetes for 8 years now. 

Before I tell you about my story, I want you to think about something. In this room right now, you see 150 kids with juvenile diabetes. That is 150 pairs of hands. Consider that, on average, each of 

these kids needs to prick their finger and draw blood for a glucose 

test six times a day. Add to that the fact that we have each had 

juvenile diabetes for an average of 5 years. If you do the math, you 

will see that this means that there are 150 pairs of hands that 

prick their fingers more than 1.5 million times and have spent over 

$2 million on just their test strips. If you look out into this hearing 

room, you will see the evidence of the 1.5 million times that diabetes has invaded a life. And we are just a snapshot of the millions 

of kids who suffer with diabetes. So take my story that I am about 

to share with you and multiply it just like we did those finger 

pricks and you will begin to understand the toll this disease takes 

on our world. 

My story is about always working to win and finding out that 

with diabetes, in the end, you can almost never beat it. I am an 

‘‘A’’ student. I compete on a swim and tennis team, and I am an 

expert skier. That is because I expect the best from myself. For 7 

years, it was the same with my diabetes. I was a model patient. 

But last fall, something happened. I got incredibly sick of it. I 

wanted so bad to be like my other teenage friends, who were free 

to worry about nothing more than boys, movies, and fun. I wanted 

to buy a Slushie without having to do algebra. So I started to lie 

to my parents, skipping blood checks and making up numbers. It 

got worse, and pretty soon, I was skipping insulin doses, too. I 

knew I was in trouble, but I couldn’t stop. I would go to bed at 

night and say, tomorrow will be a new day. I will try hard and everything will be fine. But the next morning, I just couldn’t get back 

to my life with diabetes. I was sick, but in a strange way, I felt 

free. So I kept lying and not taking care of myself. On October 30, 

a day before Halloween, I collapsed and was rushed to Children’s 

Hospital in Boston where I was put in the intensive care unit. I 

almost died. Diabetes almost got me. 

27

You might ask what would make a smart girl do such a stupid 

thing. I was completely burned out on diabetes. I felt like I had 

been through a medical appointment every few hours for the past 

7 years and I just couldn’t stand the endlessness of it anymore. It 

seems like as hard as I tried, there were always days where I was 

high or low. I couldn’t be perfect. 

I know now that this is not the way to win this battle. I have 

made myself a vow to be brave and not to give into this unforgiving 

disease, and I ask you Members of Congress to do the same. When 

it is tough to make a decision about supporting additional funding 

for diabetes research or expanding the current stem cell policy, 

think of me and all the kids in this room today. Don’t give in because it is hard. Rather, like I had to do, face the hard work and 

difficult decisions that will lead me, the kids in this room, and all 

the millions of people around the world to a cure for diabetes. That 

is the only way we will win this battle, with your help. We kids 

cannot beat it on our own. We need you and your support. 

Chairman COLLINS. Thank you. 

[Applause.] 

I have to tell all of you who have just testified that all of us hear 

a lot of witnesses, hundreds and thousands of witnesses over the 

years that we have been Senators, but I don’t think we have ever 

had a more compelling, persuasive group of witnesses than the 

panel we have just heard. So I want to thank each of you for telling 

your story. Thank you. 

[Applause.] 

It is so touching and moving, and I think if all of you go and 

meet with your Senators, meet with your Members of Congress, 

and tell them your eloquent personal stories just as we have heard 

today, you will make such a difference. You will help all of us make 

the case for more research and for passing the stem cell bill because more research, including stem cell research, is the answer. 

It is the answer to this awful disease. And hearing your stories just 

makes me want to work all the harder to bring that about. I am 

going to redouble my personal commitment just because of what I 

have heard today. 

And Steffi, I know that you have worked hard in Maine to help 

people be more aware of juvenile diabetes and the need for support. 

Could you tell us a little bit about Steffi’s Stompers and the money 

that you have raised? 

Ms. ROTHWEILER. Sure. Every year, we do a walk around Back 

Bay, and I have a team called Steffi’s Stompers. I get a bunch of 

my friends and tell them that it is to raise money to help find a 

cure for diabetes. And my friends are more like my family to me, 

so they gladly give up part of their allowance or part of their savings, and they give it to me to give to the research foundations. 

Over the past 4 years, my team has raised over $75,000 to go to 

stem cell research. 

Chairman COLLINS. Wow. That is fabulous. 

[Applause.] 

That is great. Senator Lieberman. 

Senator LIEBERMAN. Thanks so much, Madam Chairman. I agree 

with what you said about the extraordinary testimony of these witnesses. 

28

Shaynah, I don’t know if anybody has ever told you, but your 

first name means something in another language, Yiddish. 

Shaynah means beautiful. You and all the other witnesses before 

us are beautiful, not just in your physical appearance, but in your 

inner strength and your soul. You have been given a problem and 

you are dealing with it and to the best extent possible, you are living lives as normal as you possibly can. I find your testimony to 

be occasionally heartbreaking, but in the end, inspirational. 

Somebody said to me once in my life when I had had a real disappointment, a real problem, they said to me that everybody in the 

course of a life gets knocked down at some time or other, maybe 

more than once. The question is do you get back up? It seems to 

me that you are doing as much as you possibly can, and your testimony challenges those of us who are privileged to have the positions we have with the opportunity to bring about change that we 

have, to do more than we are doing to fund the kind of research 

that will give you not only better treatments, but cures. And to me, 

that begins with support of embryonic stem cell research. We can 

do that soon, and I hope we will. 

Ethan, you have had diabetes now for 10 years. I wonder, over 

that 10 years, has the way in which you have been treated or treated yourself changed? Have there been new systems or things that 

you have been told to use or been able to use? 

Mr. FALLA. Yes. When I first started with diabetes, my parents 

were giving me my shots. And then when I went to diabetes camp, 

I found out about the pumps and Lantis, and so I got on Lantis, 

and after I did Lantis for a couple months, we signed up for a 

pump, and now I am using the pump. 

Senator LIEBERMAN. And that is really working well? It is much 

better for you. That is good. Thank you. That is the kind of 

progress we have made, but there is a lot more we can and will 

do together. 

Thanks, Madam Chairman. 

Chairman COLLINS. Thank you. Senator Lautenberg. 

Senator LAUTENBERG. Thank you, Madam Chairman, and I 

thank each one of you for the message that you bring us today. It 

causes us to look inside a little more deeply and to say, what is our 

responsibility here? 

Very seldom do we have hearings with witnesses, often business 

executives or scientists, and the tears that flow from those hearings 

are tears of boredom. [Laughter.] 

And here, we have tears of affection for all of you. Katie, when 

we look at you and Ellie and hear your story, because my first 

temptation was to put my hand through her curly hair. [Laughter.] 

I have six little granddaughters, four grandsons, but the granddaughters know how to get to me. The fact is that we want to help, 

and I make a pledge to you here today that we will fight as hard 

as we can to see that there is more given to research in this field 

and to stem cell research and to ask our colleagues and ask, why 

can’t we get a vote? If you could only hear these children, it would 

tell you enough to say, hey, listen, we find money to fight wars. We 

find money to defend ourselves against terror. There can be no 

greater terror in my mind than to find out that you have a child 

29

who has diabetes and what it entails in your life. So thank you. I 

love you all. Kisses. 

[Applause.] 

Chairman COLLINS. There certainly is no more caring, committed, and compassionate organization than the Juvenile Diabetes 

Research Foundation. It has been my great pleasure to work handin-hand with you during the last 8 years, and today’s hearing reminds us that we can’t rest. We cannot lift our foot from the accelerator. We must keep moving forward. I think that each person 

who was here today is committed to that cause. 

So I want to thank all of you for being here today, the parents, 

the advocates, the Juvenile Diabetes Research Foundation staff. I 

see so many of you that I have worked with throughout the past 

8 years. This collaboration isn’t going to end. We are not going to 

rest until we have a cure. 

My special thanks to all of the children who are here today. You 

are the best advocates possible. 

[Applause.] 

This hearing is now adjourned. 

[Whereupon, at 11:05 a.m., the Committee was adjourned.] 

(31)

A P P E N D I X 


22196.001
32


22196.002
33


22196.003
34


22196.004
35


22196.005
36


22196.006
37


22196.007
38


22196.008
39


22196.009
40


22196.010
41


22196.011
42


22196.012
43


22196.013
44


22196.014
45


22196.015
46


22196.016
47


22196.017
48


22196.018
49


22196.019
50


22196.020
51


22196.021
52


22196.022
53


22196.023
54


22196.024
55


22196.025
56


22196.026
57


22196.027
58


22196.028
59


22196.029
60


22196.030
61


22196.031
62


22196.032
63


22196.033
64


22196.034
65


22196.035
66


22196.036
67


22196.037
68


22196.038
69


22196.039
70


22196.040
71

Æ


22196.041